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Endo-ERN at the 4th ERN Conference
Endo-ERN was present at the 4th ERN Conference on 21 and 22 November in Brussels, Belgium! We were present with ten delegates from five different countries. Both adult and paediatric endocrine experts, as well as patient representatives, attended the event. The lively conference featured two full days of presentations and debates, driven by plenary sessions and eight parallel workshops.
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Update Clinical Patient Management System
In the past few months the number of users of the Clinical Patient Management System (CPMS) has increased greatly and several patients have already been discussed within the system. Every member is encouraged to use the system to enrol patients, discuss patient panels, and schedule meetings within the system. If you need any help, don’t hesitate to contact us!
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Animation Video ERNs
The EU released a new animation video on ERNs for patients and healthcare professionals.
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Article “Art and Science” published in Lancet Neurology
The Italian National Centre for Rare Diseases, Istituto Superiore di Sanità, recently published the article ‘Art and Science’ in the Journal Lancet Neurology
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Review: a stepwise approach to evidence-based medicine for rare diseases promoted by multiple endocrine neoplasia type 1.
Endocrine connections recently published the review ‘Quality in, quality out’, a stepwise approach to evidence-based medicine for rare diseases promoted by multiple endocrine neoplasia type 1 (MEN1) on behalf of the DutchMEN Study Group.
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Report on RD-Action workshop
RD-Action published a report on the conclusions and next steps from the workshop ‘How ERNs can provide added value in the area of clinical research’.
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Endo-ERN General Assembly 2019
Don’t forget to register for the Endo-ERN General Assembly on March 12, 2019, if you have not done so yet! It is important that every HCP is represented, however, only 1 representative per HCP can attend. Exemptions to this rule may apply to those that also fulfil a role in the Steering Committee or in the Advisory Board.
To book a room in the hotel, please find the reservation link in your invitation. The preliminary programme can be found on our website.
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